Engagement with the cognitively impaired should not be seen as another responsibility to be added to the already overloaded pastors and congregational leaders. Rather, it is an invitation to meet God in fresh ways, to experience the reality behind the church’s doctrines, and to be transformed and renewed by love that endures when knowledge and language cease.
Kenneth L. Carder, Ministry with the Forgotten: Dementia Through a Spiritual Lens
Let these families know you are thinking of them and praying for them. Each of these ideas might be a stand alone ministry for an individual or a group. See #3 on this Action Plan for more ideas.
A Loving Through Dementia volunteer, Lori Marsten, chose to begin a card ministry. Lori creates cards for families facing dementia, and sends uplifting messages throughout the year. Each card is mailed with an Alzheimer's stamp. A sampling of Lori's cards:
Lynda Everman chose to use cards containing the art of Lester Potts for her own card ministry: The image for this lovely Forget-Me-Not notecard was painted by the late Lester E. Potts, Jr. who learned to paint in the throes of dementia. See #9 in this Action Plan to learn more about Lester and his artwork.
Faith communities, individuals, or groups (Bible studies, Sunday School Classes, etc.) can raise dementia awareness and increase funding for research for prevention, treatment, and eventually a cure by promoting the use of the Alzheimer’s Stamp. Use on all Christmas cards, occasional cards, all correspondence.
One sheet of the Alzheimer’s Stamp (officially, the Alzheimer’s Disease Research Semi-Postal Stamp) is $15.00. For every sheet purchased, $2.40 goes to NIH for research.
As of the end of December 2022, the total amount raised for research is more than $1.3 million. Purchase this semi-postal stamp here.
Sometimes, as family caregivers, we feel we can do very little to fight for a cure for this relentless illness. Here is a thought: Today, there are 11 million unpaid family caregivers. If each of us purchased only one sheet of Alzheimer’s Stamps ($15.00), caregivers alone could raise $26.4M to go to NIH for life saving research.
Caregivers tell us that as dementia progresses, life-long friends, family, and even ministers no longer visit. People who have been faithful members of the faith community are left in crushing loneliness and isolation. How can that be?
We all want to belong, to contribute, to have purpose. The same is true for people who live with dementia. We can learn to include, befriend and support. We can bring these families into the center of our faith communities.
We can learn to include people living with dementia in volunteer activities and in as many activities in the faith community as possible...for as long as possible.
It is true that cognitive abilities are constantly being lost, but we are so much more than our cognitive abilities. Throughout the journey, faith communities have the opportunity to recognize, encourage, and appreciate the abilities that remain. We can open our minds and hearts to see not a person who lives with dementia, rather simply the person. When that happens, blessings begin...for the person living with dementia...for their families...and for the rest of us.
As we learn to listen, to observe, to be present, and to become memory keepers, we will realize that people with dementia are teaching us, transforming us, and loving us even to the end of their journey.
The following passage is from the intimate and beautiful conclusion of Ministry with the Forgotten. It is wriiten by retired United Methodist Bishop Kenneth Carder to honor his wife Linda, who lived with Frontotemporal dementia.
As I write these words, Linda sleeps calmly in the bed nearby...Dementia has impacted every aspect of our lives and continues to influence how we feel, relate, believe, and behave. Although Linda’s ability to comprehend, communicate, and react is now severely limited, her very being continues to inform, inspire and enrich my life. We, as a family and extended community, now hold her memories and foster her identity as a child of God with inherent worth and dignity.
Inasmuch as you have done it unto one of the least of these you have done it unto me.
Matthew 25:40
Educate yourselves by using the resources in this Action Plan. Share what you have learned.
When one person lives with dementia, everyone who loves that person lives with dementia, as well.
Sheila Welch
What does dementia mean to the family loving someone through this illness?
We call on experts to give us that perspective. Rick Perry and his family are loving his wife, Martha through Early Onset Alzheimer’s. Their story inspires us all to do more, to love better.
Reach out to the caregivers (care partners, care supporters), whichever you choose to call those who love someone through dementia. Get to know them. Talk to them about how dementia has changed their lives, and about how their faith community can better meet their needs. Listening is a ministry.
The problem is not that people with dementia forget. The problem is that they are forgotten.
Pastoral Theologian John Swinton
Understand that families facing dementia...the persons living with it and the families loving them through it...are grieving. It is a perpetual grief that lasts throughout the journey. We can walk with them. We can lift them up. We can let them know that they belong to a community of faith...they are not forgotten.
Director of Spiritual Care at a long term care community, Support Group Facilitator, Grief Specialist, and former Hospice Chaplain
The following resources will raise dementia awareness, provide dementia education and offer insights into how to include, support and love persons who live with dementia.
A basic dementia education is found in our free downloadable guide and its suggested resources:
To better love and better serve these families, leaders must know what dementia is, what it means to the person living with it, and what it means to the family.
Familiarize yourself with Bishop Ken Carder’s five-part course for faith communities:
Director of Spiritual Care at a long term care community, Support Group Facilitator, Grief Specialist, and former Hospice Chaplain
Director of Caregiver Training and Education, Founder of LiveWell Dementia Training, Creator LiveWell Wellness Review
The GA Division of Aging Services recently received a license to provide Dementia Friends information sessions in Georgia. Dementia Friends Champions are trained to provide these sessions. The sessions last 1 hour. Dementia Friends is part of a global movement that is changing the way people think, act, and talk about dementia. The Georgia Gerontology Society is assisting with training champions and getting the word out.
Caregivers have taught me that a key to surviving the caregiving journey is realizing there are others who are living their lives. There is power in being with those who understand. Support Groups offer this power. They offer help, hope and a particular healing that comes only from sharing and contributing to the healing of others.
- Sheila Welch
Host the event yourself, or join forces with other faith communities to make ministering with these families a combined...even ecumenical...effort. You may also take this opportunity to co-host events with community leaders and organizations.
Volunteers have an opportunity to bring music and song to persons living with dementia. Familiar music, poetry and prayer often can be enjoyed throughout the entire journey.
Advocate, Psychologist, Musician, Author, and Caregiver, Don Wendorf chose to share his musical talent with persons living with dementia.
You might begin a choir for those who live with dementia or encourage their participation in the existing choir. For people with memory loss, choirs offer powerful stimulation and enhanced social connections.
The Side by Side Choir was founded in 2015 to create a singing experience for those living with dementia to find joy and community. In 2022, this video performance of You've Got A Friend raised $5,000 for Ukraine.
Even those who can no longer communicate verbally, may join in as you sing familiar songs, clap along to the rhythm or recite familiar poetry or prayers...as seen in this video of Naomi Feil and Gladys Wilson. Naomi Feil is an American gerontologist who developed Validation therapy (holistic therapy that focuses on empathy and provides means for people with cognitive deficit and dementia to communicate).
There is a special part of the human brain called “The Gift” where memories of music, poetry, and prayer are stored. Memories associated with “the arts.” Even if language is no longer available, this “Gift” most often remains, offering wonderful opportunities to reach people living with dementia. Faith communities can bring these memories to life!
Volunteers might offer art to persons living with dementia. It was a volunteer who introduced Lester Potts to a paint brush and paper. A volunteer who saw Lester, not as a person who lived with dementia, but as a person. Lester, who could no longer communicate with words, began to tell us his story through his art.
Like Lester Potts, Linda, the wife of a Loving Through Dementia spouse group member, was not an artist before Alzheimer’s entered her life.
Linda's Art:
A stole or tallit can be liturgical art. This ministry encourages your pastor, chaplain, priest, or rabbi to use liturgical art in promoting dementia friendly faith communities. In her book, Stolen Memories: An Alzheimer’s Stole Ministry & Tallit Initiative, Lynda Everman offers step by step instructions and describes the use of hand-sewn, individualized stoles and stole-style tallitot in advocacy for Alzheimer's and related dementias … but in the words of (Ret.) Bishop Kenneth L. Carder, author of Ministry with the Forgotten, Stolen Memories “is more than a creative book; it is an invitation to join a movement to bring hope and healing to people stigmatized and marginalized by society.”
Representatives from twenty faith traditions, and counting, now wear Lynda's creative art...all in the effort to raise dementia awareness, to honor the dignity of those who live with dementia, and to hold their memories.
Rev. Ann Mann, Associate Pastor with Dr. David Campbell, Senior Pastor, Due West UMC
Rev. Derek Jacks and Rev. Sherrad Hayes, Cumberland Presbyterian
Rev. Dr. Donovan Drake, Presbyterian (USA)
Rev. Dr. Richard L. Morgan (to whom the book is dedicated), Presbyterian (USA)
Rev. Bobby Fields, Jr., Baptist
Rev. Katie Gilbert, Cooperative Baptist
Rev. Kathy Fogg Berry, Interdenominational Christian
Rev. Linn Possell, United Church of Christ with Sheila Welch
Rev. Tracey Lind (living with frontotemporal degeneration), Episcopalian with Lynda Everman
Rev. Danielle Thompson, Episcopalian
Rabbi Israel de la Piedra, Jewish
Monsignor Paul Fitzmaurice, Roman Catholic
Rev. Julie Conrady, Unitarian Universalist
Rev. David Saunders, Anglican with Rev. Dr. Cynthia Huling Hummel (living with dementia), Presbyterian (USA)
Rev. Dr. David Seymour, Lutheran
Rev. Carol Steinbrecher, Congregational
Bishop Glenn B. Allen, Sr., Destiny Christian Center International (Nondenominational) with Dr. Fayron Epps
Sheila Welch, Coordinator: Loving Through Dementia and Terri Henkel, Associate Pastor - Alpharetta First United Methodist Church.
Janice Hicks wears a shorter, “portable” Chaplain’s Stole Chaplain and Ordained Deacon, episcopal Diocese of Washington
The Rev. Deacon Jerry Jacob and The Rev. Jay Gardner (Episcopalian)
The Rev. Deacon Jim Saumweber and his wife, Georgie (Roman Catholic)
Rev. Dr. Mary Louise Bringle, Professor and Author of When Memories Fade, a hymn set to the tune, Finlandia.
Bishop Ken Carder’s Commissioning Service with his students at the conclusion of his course, “Dementia Through a Pastoral Lens.”
A Stephen Ministry is uniquely positioned to befriend the person living with dementia and the family loving that person through it...to let these families know that they are not alone. Encourage dementia training and education along with traditional Stephen Ministry training. A Stephen Ministry equips lay people to offer members of their congregation and community: prayer, support, encouragement, and a compassionate listening ear for as long as there is a need. A Stephen Ministry also offers vital support to the pastoral team.
Begin a Congregational Respite Program – a Respite Ministry, or join forces with other faith communities to provide a spiritually integrated program offering meaningful activities, social engagement, art, music and exercise for those living with dementia. This also provides a much needed respite for the caregiver.
The choices in this Action Plan are here to help faith communities, groups, or individuals become champions for families facing dementia:
Dr. Fayron Epps attended Loving Through Dementia's very first Leader's Workshop. Using the toolkit provided, she ran with her own ideas! The Alter Program was born.